Campaigners will have the chance to hear more from the Oxford University Hospitals Trust tonight.
Hampshire Mum's Parkinson's Secret
New research shows two fifths of people with Parkinson's in the South East have felt the need to hide their symptoms - or lie about having the condition.
Parkinson's UK have called the findings "alarming".
Mum, Beverley Cook, lives in Alton, Hampshire. She was diagnosed with the disease in November 2006 but only told immediate friends and family for the first three years.
Beverley said: "It was such a raw feeling that I just couldn't talk about it, even to other family members, I didn't want to speak to them when they rang.
"My hand would be very shaky with a tremor so for the three years I was constantly trying to hide that. It always got worse if I was eating or holding a piece of paper, but I felt like people would be watching me and feeling sorry for me if they knew.
Adding, "The stress of trying to hide it seemed to make everything worse. People would ask me if I had a bad back, I didn't tell them it was Parkinson's that was causing problems.
"Eventually I realised that word was getting out, I could tell by the way that people were speaking to me that they knew something was wrong, so I told them. And they were so kind, I wondered why I had been hiding it from them for so long."
Listen to our full interview with Beverley below.
We put Beverley's concerns to Steve Ford the CEO of the charity, Parkinson's UK.
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